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How Speak Now For Kids Makes A Difference

I don’t think that any parent ever imagines that the birth of their child ends up in a situation as scary as a neonatal intensive care unit or facing a lifetime of medical care, surgeries, and treatments for your medically complex child. These types of things are simply out of our control, and we simply endure and learn how to deal with the demands of a sick child, and a very fragmented health care system.

I don’t think that any parent ever imagines that the birth of their child ends up in a situation as scary as a neonatal intensive care unit or facing a lifetime of medical care, surgeries, and treatments for your medically complex child. These types of things are simply out of our control, and we simply endure and learn how to deal with the demands of a sick child, and a very fragmented health care system.

My daughter was born with an extremely rare syndrome. At the time my husband was serving in the United States Marine Corps and we lived in California. Within 3 days of her birth, we found out that she had multiple organ anomalies and would most likely need a kidney transplant in her first 10 years of life. We wanted to get home to Cleveland so we could have the support of our families and so she could be cared for at Rainbow Babies and Children’s Hospital. The United States Marine Corps were unwaveringly supportive and granted us with a humanitarian transfer home. At 8 months old she had her first surgery at Rainbow Babies to de-tether her tethered spinal-cord, we were looking at 6 more operations and were scheduled to see 12 different physicians and three different therapists.

A few months later my husband was honorably discharged early from the Marines and needed to find another way to sustain our family. There was no way I could maintain a job considering that our daughter needed so much medical care, and we were really struggling. My husband and I are educated people; we both have our college degrees and are currently pursuing our Master degrees, however, coming out of the military made it extremely difficult for my husband to find work. We were hoping we would be set up for success but quickly realized we were dealt a unique set of cards that would challenge us a first time parents transitioning back to civilian living.

I am so grateful for the support that our daughter’s pediatrician gave us nearly 6 years ago when we arrived back home in Cleveland; she set us up, as parents, and our daughter, for success. She connected us with multiple specialists at Rainbow Babies and Children’s Hospital and also connected us with social programs such as Help Me Grow, the Cuyahoga County Board of Developmental Disabilities, and arranged for our Medicaid application to completed and submitted as quickly as possible. If it were not for all the passionate and intelligent people in the beginning, I do not know where my daughter would be today.

My husband and I think a website like Speak Now for Kids is important for real parents to share their struggles of obtaining and sustaining insurance coverage for medically complex children. We think it is important to recognize and share that not all people who need government funded insurances are abusing the system, but really need it to help support and improve the quality of life for these very special children whom we love so much. There is no argument that health care is expensive, there is no argument that life happens and it is out of our control if our child becomes or is born critically ill. We think it is vital for parents, such as us, to be able to reach out to the senators and congressmen and women that work for the American citizens to pass on our voice and share our stories. This is a place for parents to connect, to advocate, and to speak up for the children we relentlessly fight for.

Chrissie Blackburn is a member of the Speak Now for Kids Advisory Group.